The health-care experiences of families given the prenatal diagnosis of trisomy 18

Abstract

Objective: The objective of this study was to examine parent-reported experiences in the health care system after receiving the prenatal diagnosis of trisomy 18 and to identify factors that contribute to satisfaction with care.Study Design: Nineteen families who received the diagnosis between 2002 and 2005 were given semistructured telephone interviews. Of the 19 families, 11 continued the pregnancy while the remaining 8 chose induced abortion. Classical content analysis was utilized to identify themes among subject responses. Result:We identified several specific aspects of care as key in either being highly satisfied or dissatisfied: expressions of empathy from provider, continuity of care, communication, valuing the fetus and participation in medical decision-making.Conclusions: Aspects of care that were identified as reasons for dissatisfaction are potentially modifiable by training, education or teambased approaches. Further studies are necessary to determine how we can improve the quality of services during prenatal diagnosis.

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“…Families who have experienced a fetal diagnosis of trisomy 18 describe how inconsistent information creates a sense that clinicians are biased or untruthful. 18 This case illustrates the process by which that happens, the problems that arise for a health care team faced with such a situation, and the role of the ethics committee in trying to facilitate communication and good decisions.…”

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“…20 Other studies focused on a single diagnosis [21][22][23] or used survey data based on recall rather than conducting in-depth interviews with parents during the pregnancy. Therefore, we conducted a qualitative descriptive study, using semi-structured, open-ended interviews of parents in the perinatal period to allow in-depth, personal storytelling.…”

Improving the health care experiences of families given the prenatal diagnosis of Trisomy 18

“…2 We would like to contribute our own regional data and our views as to why this gap may exist. We feel it is important to present these data as they will become increasingly influenced by antenatal diagnosis and interruption of the pregnancy.…”